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Mysteryshopper Asked February 2023

With dementia in play, how do we discuss an upcoming amputation?

A diabetes-related leg amputation is coming up soon for my LO. She is non-ambulatory, so rehabilitation and a prosthesis are not going to be attempted. The amputation is being done primarily to avoid further complications/infections and to give her as much comfort as possible with whatever time she still has.


 


She's been through a lot recently, and her mentation wasn't great to begin with. I am not at all clear on what her awareness level is (i.e. one minute she can't remember her son's name, but the next minute she remembers accurate details about the person who drives the facility's van.)


 


One family member feels this lady "deserves" a lengthy preop discussion and feels it will prepare her for the reality of her leg being gone after the surgery. I do not feel she will understand or remember a preop conversation and therefore it would be unhelpful and very stressful. I was at a recent appointment with this lady at which the amputation was discussed and she had no reaction at all. And it wasn't like she was pouty and ignoring us, it was like she was mentally "checked out" and I think that's the situation much of the time in terms of explaining things to her.


 


The elephant in the room is the reality that anesthesia will make her mentation even worse. And we don't know how much worse or in what specific way.


 


I am not clear how much to try explaining to her. However, I cannot imagine waking up from surgery and realizing my leg was gone. Not knowing her mentation or what she understands/remembers I don't know how to approach this. I fear she will continuously rediscover that her leg is missing and will constantly relive that over and over.


 


So I'm hoping someone on the forum has seen this situation - dementia with moments of apparent clarity.... when a major surgery is looming. It's really two questions: What do we tell her beforehand? And, how do we support her mental state when she realizes her leg is gone and then possibly cannot remember the leg is gone?

Fawnby Feb 2023
Torture for her. This is horrifying. If this were my LO, I wouldn’t want it for her, and I’m sorry you’re involved.

TeethGrinder65 Feb 2023
You're right in that anesthesia will further diminish her mental clarity.

If there is a way to talk to her POA about not amputating, I'd try my best. The loss of a limb is going to terrify your loved one, especially if she's checked out. I'm not sure why she doesn't qualify for hospice...you might consider getting a second opinion. Best of luck.
Mysteryshopper Feb 2023
The explanation I got on hospice was that "there's really nothing life-threatening that's wrong with her." Seemed strange to me, but I don't have POA so I'm just a "helper" in the eyes of the law - even though I'm the main caregiver over many years and probably know more of the day to day health history than anyone else. I'm very concerned about her being shocked over the limb loss and downright fearful at the trauma of it. I don't know how to address this going forward and I will be the one handling doctor's appointments, etc.

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Mysteryshopper Feb 2023
Just for clarification, I'm not POA so I can't stop this process at all. Whether I agree with it isn't the issue. However, I do help with care coordination (she lives in a facility), doctor's appointments, finances, etc. I'm concerned about how to prepare her for this - if that's even possible to truly do with her poor mentation. I do think the lengthy pro/con that the one family member wants would not be understandable to her or helpful. I'm also concerned about moving forward after this procedure - and whatever that may bring. I may be looking for answers that really don't exist. It's been a long, sad, caregiving journey and I'm more reaching out in desperation. Maybe I'm wording this badly. I am sorry if I did.

JoAnn29 Feb 2023
I am so with Alva here.

My GF had her leg amputated up to her knee. Juvenile diabetic. She refused Rehab so they sent her home. She was in excruciating pain. Ended up needing to go to a specialist. Her stump healed but she did have a sore that took a long time to heal. Then there is phantom pain in the part of the leg thats not there. And the longer she is under, the worse her Dementia will be and the time for the anesthesia to get out of her body. And the shock to the system. I so would not put someone with Dementia thru this. I would call in hospice and let nature take it course.
Mysteryshopper Feb 2023
I think you've mentioned this same friend in other posts and I appreciate you doing so. I'm not POA, so I can't stop the process. I handle doctor's appointments, etc so I'm looking for how to appropriately prepare someone in her condition and also how to move forward post op. I share your concern about anesthesia - for sure.
AlvaDeer Feb 2023
Who is the POA?
What has been the advanced directive situation?
Has palliative care options and consult been done?
Is it time for hospice.
With a diabetic MANY amputations end up non healing and open to infection and sepsis just as she is already prone to. It is often an inch at a time surgery being done. There is the problem of phantom pain (when the limb removed hurts).
I would almost certainly not do this surgery for a loved one who was no competent to approve and understand it and the rates of failure in it. There may be gangrene involved. If so that is also not a good way to go.
I would consider, as I said, consults for all options including palliative and Hospice, and then try to come to the best solution I could were I the POA.
Mysteryshopper Feb 2023
I am not POA, but I know there is some kind of advanced directive. She's on palliative care, but I am told she does not qualify for hospice. She's already had infections and several previous surgeries on the same leg for the same reason (deep, non-healing wounds). We are trying to keep her comfortable and free from additional painful infections, etc. I believe POA has already authorized the surgery and I can't stop him, but this is very sad all the way around. When the person's comprehension is limited, it's even tougher to address it with them - even just explaining the procedure to them.
cwillie Feb 2023
Sorry but I don't agree with you. Unless she is so far gone in dementia that she has less self awareness and understanding than a babe in arms she absolutely deserves to participate in a discussion about the amputation, and she deserves to be listened to if she ultimately decides against the procedure. Whether she consistently remembers the whys and wherefores after the fact is a different issue altogether and something that will have to be dealt with at that time.
Mysteryshopper Feb 2023
Thanks for the reply. I think I was more wondering how much to tell her and what others have found helpful. Something understandable when mentation isn't clear. Sometimes she's more on target with things, but other times she's delusional and not oriented to self, others, or surroundings. It is ultimately not up to me as I'm not POA. My role has been mainly hands-on caregiving and management of the situation. Really just looking for ideas from people who know more than I do.
sp19690 Feb 2023
Sorry i dont think removing the leg of someone with dementia is a good idea. I believe someone else had this done and regretted it. Do a search on the forum for amputation.
Mysteryshopper Feb 2023
Will do. Thanks for the idea.

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